As I head into this transition I find myself in that same space except rather than "things" its information. I'm trying to find a way to cope with a difficult reality (one I'll talk about in a future post).
First, I discovered why I was flattened so badly the past few days. I was exposed to a toxin in addition to pushing myself. It it was purely viral then why did taking a shower help me feel a little better?
I'm attempting to figure out the Facebook thing (ideas are my strengths rather than nuts and bolts practical stuff). Sunday I looked at my "friend" list and tried to figure out how to make it smaller. I didn't want to delete anyone with a chronic illness especially this one. I thought about putting up a post that I've seen others do about making two facebook pages but that doesn't feel right.
I ended up accidentally deleting about 10 people. I went on automatic. In my head I was thinking about several things but stopped paying attention to what I was doing. Oops! I thought about sending them a message asking to "refriend" me but decided they wouldn't notice anyway.
I think I'm so invisible these days that no one will notice I'm gone.
My housemate invited me to a play on Sunday. I was so happy. When one has been isolated for over 6 years it's a big deal to be invited anywhere or included or treated like you matter.
I couldn't go for two reasons. One was I was too sick and the other was that I couldn't afford the $30 ticket (anything extra comes out of my food budget and I've already spent $100 of this months food budget by making partial payments on medical bills).
People who don't suffer from this or who suffer a mild version cannot comprehend all the little losses that occur each day when having such physical limitations. For example I absolutely had to drag myself to the store earlier (I was fortunate enough to be feeling a tad better than the past 4 days).
As I was standing in the vegetable aisle picking out some Kale I looked up as two woman greeted each other, hugged, and started talking about their lives. My eyes filled up with tears as I felt the longing that emerged. It's been years since I've had that happen. Sometimes its overwhelming how much I miss having friends like that.
After being isolated so long its like I've forgotten what having friends feels like or how to go about making friends or how to accurately judge social cues. I seem to be misreading them.
But, I'd rather be alone than have what I've come to call "pity visits" or "nursing home visits". Anyone who's housebound has had them. They are the people who come to visit out of guilt or a sense of obligation all the while sending out nonverbal cues of not wanting to be there. They think I don't notice but I do. We all notice these things. The relief that's in the air when they announce its time to go is palpable. Or there's the flaky people who schedule a pity visit but keep canceling or fail to follow through.
I continue to awkwardly bumble through my life hoping things will shift. If they don't I'll gracefully bow as I take my final exit. I'm giving it until my birthday in October (I hope).
There is a new book out that was written by someone who suffers from this illness (who has mostly recovered by doing "extreme mold avoidance"). I'm always in support of sharing information when someone finds a way out from this prison.
Lisa has chronicled the life of someone who has all but recovered using a strategy he learned in the army.
I wanted to include a link in case anyone else is interested:
In case the link doesn't work you can go to amazon and look up Lisa Petrison, Ph.D. "Back from the Edge...".
I know there is a lot of controversy about mold avoidance but the reality is that people have dramatic improvements when they follow the guidelines.
I know that the people who have embarked on this journey have had to go "in the closet" so to speak because of the judgment that has come their way. They become as marginalized by the CFS community as CFS patients do by healthy people.
If I had the money to sustain a living like that I would try it. I have noticed a big bump in improvement if I'm in the right type of living situation. And I go downhill if I'm in an environment filled with various toxins. I'm still learning what affects me.
I'm feeling better than I have the past couple days but am still feeling rotten. I'm going to air out the house and do a bit of mopping and stuff.